Having Lupus has made me very knowledgeable about the Human body. My physicians and I sit and talk like colleagues. I have had to take charge of my case because many times my doctors have not been agressive enough in my treatment and have kept many stones unturned.

I have Pernicious Anemia, Sjogren's Syndrome, Auto Immune (Lupoid) Hepatitis, Hashimoto's Thyroiditis, Central Nervous System Involvement, Asthma . . . should I go on?

A more complete listing of my signs and symptoms include: Malar rash, butterfly rash, Anemia, White blood cell and platelet abnormalities, joint and muscle pain, headaches, central nervous system involvement, liver enzyme elevations, positive ANA at 1:2560, Anti-microsomal antibodies, anti-smooth antibodies, anti-Parietal cell antibodies, Anti-Intrinsic factor Antibodies, etc.. Oral ulcerations, Dry mouth, dry eyes, swallowing problems, acid reflux, enlarged liver, goiter on thyroid, Hypothyroidism, enlarged parotid glands, sun sensitivity, visual changes, unsteady balance, chewing problems, loss of sensation in my arms and hands, numbness and tingling.

It's a scarey prospect to juggle all these conditions, wondering what the future will hold; wondering which organ will be hit next. Yet, I have a strong faith in God which sustains me. He has kept me strong through the maze of tests, mis-diagnoses, and mistreatments I have received over the years.

I personally believe that people with Lupus are the strongest people alive because we live with a disease that is hard to detect. For years before it is properly diagnosed, we go through such abuse from the medical profesion, we begin to question ourselves and our sanity. And then, WELL MEANING friends make comments such as, "GOSH, YOU LOOK TOO WELL TO BE SICK!" There are also those who like playing doctor and give you their "tried and true" remedies to solve your troubles. Now don't get me wrong, homeopathic products do work. Vitamin supplements, chiropractic care, Reikii and massage therapy, and regular medical care all have their place in the scheme of good health. However, sometimes you get doozy pieces of advice . . .

My sister's boyfriend suggested to me that eating lollipops had caused my condition. YEAH RIGHT! IF that was the case, we would have seen a butterfly rash on Telly Salvalas! LOL!!

I am constantly reading and trying to upgrade my knowledge base about this condition. Knowledge is power!!!! We all need to keep in touch with our conditions and get to know our bodies so we can take responsibility for our care and well-being. I do not feel that my health care has been near as satisfactory as it should be, and would be if I had a different disease. Far too few physicians are educated thoroughly on SLE.

The only means of coping I know to be effective with lupus, and with life in general, is my trust in God. For me, prayer is the answer to everything we have to deal with. Lupus especially, is out of my hands so I leave it in His hands. I also strive every day to look for the good in life, to be grateful for what I have. I look for ways to work through my problems. I try to be as informed as I can so it isn't as scarey. Ignorance and the unknown are what frighten us the most. Having an understanding of what is taking place in your body and what you can do to control it takes the power of fear away.

However, I also realize that I am sometimes not strong enough to handle this alone, and I trust God to work through other people. I seek counseling or call a friend, my pastor, or even set up an appointment with my doctors just to talk. I try to be actively involved with my treatment program so I feel like I have some control over the situation. I also try reaching out to others by doing volunteer work. When we become self-absorbed, things seem worse. When we focus on others, we don't have time to worry about ourselves. And last but not least, I try to have fun. Laughter is and always will be the best medicine! It is my goal to move beyond this condition to a life that is productive and fulfilling.

I am grateful for the support of my family, and the thoughts I would like to share are: PLEASE don't judge someone by looking at them. Just because someone "appears" well doesn't mean they are feeling well. Please don't tell me to move faster then I am -- I am doing the best I can. Be patient with me; I need your support. I need to know that no matter how much my health has changed, or how unpredictable things have become, that you will be there for me and that your love will never change. I AM scared at times so please don't expect me to always put up the brave front. I need the freedom to share my honest feelings with you. Don't pity me; I don't want to be pitied. I expect to live my life as nromally as possible, but you must accept certain accomodations and limitation. I truly AM strong. If you need me, I am here for you -- don't be afraid to come to me if you need to talk. Yet, remember that I too, am human and need comfort.

Also, please leave my diagnosis and treatments to the doctors. As much as you may believe that you understand my condition, unless you live with it, you truly cannot understand. LOVE ME ~ that is all I ask.

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